Brain Tumor News Blast - fundraising appeal
Posted on: 12/22/2008
As I recently mentioned, a great deal of progress has been made in the fight against brain tumors, and the Musella Foundation has been at the forefront! We have funded many projects – see virtualtrials.com/grants.cfm for a complete list of them – here are a few of the highlights:
We have funded immunotherapy research with Dr Linda Liau at UCLA, Dr. Black and Dr. Yu at Cedars Sinai, and Dr Okada at University of Pittsburgh which have resulted in human clinical trials of 3 different types of vaccines – treatments that are being used right now, which have already helped many patients. Hopefully, soon these vaccines will soon be approved and perhaps even be used together to make a huge impact in treating this disease.
We have funded (and my son even volunteered last summer to help the researcher) the Brookhaven National Lab microbeam radiation project. Theoretically, it should result in more effective radiation therapy with fewer side effects. The project had a few ups and downs over the years, and they had trouble raising money to continue it. Without our help, it may have been discontinued. The most recent experiment that we funded was a big success. We are now trying to raise money to fund one more step – and if it is as successful as this last project, should enable them to get a large government grant to complete the research and make it available to patients.
We have also funded a few successful basic science projects that help us understand the biology of these tumors, not just glioblastomas, but also other tumor types that get much less funding: oligodendrogliomas, low grade gliomas, optic gliomas, brainstem gliomas and medulloblastomas.
On the activist front, we played a small role in getting Temodar approved by the FDA, and a large role in getting Medicare to pay for it. We played a major role in getting Medicare and other insurances to pay for Gliadel. We helped other organizations achieve their goals by publicizing their activities on virtualtrials.com and the brain tumor news blast. We were one of the 3 founding members of the grey ribbon crusade (greyribboncrusade.org) which is an affiliation of over 30 non-profit organizations and 140 individuals who are trying to work together to fund brain tumor research and increase awareness.
Our website, virtualtrials.com, is on pace to get 3.5 million visitors and over 12 million page views this year. The website has over 4,000 articles, and the contact information for over 1,400 brain tumor doctors, most of whom are willing to answer email questions from our members, and some even offer free scan reviews by mail. We have a guide for the newly diagnosed patient, an extensive video library, database of treatment options, many online support groups, as well as links to most of the other important resources available. We run a patient registry, called the brain tumor virtual trial, which acts as an early warning system to let us know if there is a breakthrough (or if a treatment isn’t doing that well). Through the virtual trial, we recognized the beneficial effect of the combination of Temodar with radiation, about a year before it became common knowledge. If there is a breakthrough –this is how we are going to notice it among the many hundreds of available treatments.
Our plans for the website for 2009 include:
1. a reorganization of the structure of the website
2. updating of the articles and the addition of new articles
3. the creation of a video version of our guide to the newly diagnosed – sort of like a “Brain tumor for dummies” style that will help the new people get up to speed quickly. Knowledge is power!
I have many research proposals on my desk, but have identified these 3 as the highest priority:
1. The use of a drug to inhibit tumor invasion combined with Avastin in a rat model. This is a new concept – which I talked about before on the brain-temozolomide group. IF successful, it can quickly result in a human trial – and may have a big impact.
2. The use of carboplatin delivered by convection enhanced delivery, as a radiation sensitizer, in a rat model. Again, if successful will quickly result in human trials.
3. The next round of experiments for the microbeam radiation project
I would like to get these 3 funded as soon as possible. I also have a few other proposals that will be coming in soon for other interesting projects. We need to raise about $175,000 now and more in the following months.
So – I am asking for donations. I know this is a hard time of year for everyone… but this is important. This email is going out to over 5,000 people. If everyone donates, that works out to only $35 per person. Of course, not everyone can participate, so it would help if we all tried to get a few of our friends and families to each make a donation of $35, $50 or more, but any amount will help. Consider leaving the Musella Foundation in your will, and naming us for memorial donations. We will put the money to good use, and quickly.
100% of your donation will go toward research projects. The overhead costs for the foundation are paid for by our website sponsors, and from a bequest made by my friend, Steve Coffman, who died this year. He left the Musella Foundation in his will – with the funds directed to help cover our overhead so that we can remain strong for a few years.
I am honored to be the recipient of the 2008 Tim Gullikson Foundation Spirit Award.
“The Tim Gullikson Spirit Award is presented to a brain tumor patient, caregiver, volunteer, corporation or benefactor, that embraces the fighting spirit and positive attitude that Tim used to battle -- and live with -- brain tumors, and in doing so, give hope to others. It recognizes someone who has shown extraordinary and unique courage, resourcefulness or ingenuity in battling the disease, or a person who shows an extraordinary effort to help fulfill the goals of the Foundation to assist brain tumor patients and their families as they cope with the illness.”
To make a donation, go to virtualtrials.com/donate
Or send a check to:
1100 Peninsula Blvd
Hewlett, NY 11557
Note that we can not accept non-USA checks, but we can accept credit cards from outside the USA on our website. We use Google checkout to process the cards, which is the safest processor available, and they don’t charge us processing fees.
Al Musella, DPM
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